The role (or not) of patients and the public in realist reviews

13 January 2020

Ruth Abrams, Geoff Wong, Julia Hamer-Hunt, Bernard Gudgin, Stephanie Tierney, Shoba Dawson, Anne-Marie Boylan and Sophie Park

Today, patient and public involvement (PPI) in research activities – as contributors rather than participants – is an expected component of health-related studies ^[1]. Researchers are increasingly held to account for facilitating such involvement and for reporting it accurately in papers they write ^[2-3]. PPI has become commonplace in empirical, primary research, but it is less readily adopted within evidence synthesis. Evidence synthesis, an umbrella term for different approaches to combining existing literature, includes realist reviews. Realist reviews intend to explore what works, for whom and in what contexts, most commonly for a specific healthcare intervention or innovation ^[4]. Involving patients and the public within realist reviews has received much less attention than for other forms of evidence synthesis ^[5-6]. Having recently conducted a number of realist reviews, we reflected on PPI within these pieces of research. Two broad and important issues emerged - why are patient and public contributors being involved and how? We recognised that the need for and purpose of PPI differed between our reviews, as did the processes for involvement. Looking back across our reviews, we have generated the following prompts for researchers (see table 1) that would have been helpful to consider prior to the start of our realist reviews. These prompts have been iteratively developed by the research team with the help from two patient contributors involved in our reviews. We intend for these prompts to act as points of reflection for researchers doing realist reviews. These prompts remind researchers to clarify why and how they will involve patient and public contributors.

Table 1: Reflective prompts for researchers about patient and public contributions in a realist review · Why have you chosen/not chosen to involve patients and public contributors in your realist review? · If you intend to exclude patients and public contributors from a particular stage of your review, what is your rationale for this? · What expectations do you have about the relevance and rigour of patient and public contributions to the review? · How will you communicate to patient and public contributors what is expected of them in relation to a realist review and its development? · How will you determine any necessary boundaries (e.g. time, remuneration, expertise) and communicate to patient and public contributors what these are? · What processes will you have in place to incorporate and respond to patients and public contributors’ interpretations of meanings and judgements generated by the review? · How will you make decisions about which patients and public contributors’ suggestions to take forward/not take forward? · How will you provide feedback to patients and public contributors about the impact of their contributions?

Our reflective prompts for patients and public contributors involved in realist reviews (see table 2) serve a similar function of helping them reflect on why and how they will be involved.

Table 2: Reflective prompts for patient and public contributions in a realist review · Are you clear on your commitment to this project (e.g. how long and to what extent you will be involved in this review)? Can you commit to this? · How would you like to be kept updated on the project and its progress? What information can you expect? · What resources will be provided to help you understand what a realist review is and how to conduct one? · How will you communicate the limitations of your knowledge about realist reviews and what you feel is appropriate for you to contribute to the research team? · How will your involvement be justified financially? What benefits will you bring to the production of the review? · What communication channels and emotional support will be available to you throughout this review?

These prompts recognise the expertise of all those involved in a realist review, as well as respecting the limits and boundaries of this knowledge. In conjunction with the prompts above, the Realist and Meta-Review Evidence Synthesis: Evolving Standards (RAMESES) guidelines on quality and reporting ^[7] may aid researchers. These standards provide some indication to researchers on possible rationales and justifications for PPI in realist reviews. For example, patient and public contributors may be asked to help with developing initial programme theories or to comment on the veracity of context-mechanism-outcome configurations and their relevance to their everyday lived experience. Consideration of PPI from the outset may help to maximise the utility and relevance of patient and public contributors to the project at hand.

We found that PPI was important for our realist reviews, adding a new dimension to our understanding of the data and supporting us to produce findings that are relevant to end users of our research. By providing these prompts for researchers and patient and public contributors, we hope to help fellow realist reviewers plan prospectively, efficiently and ethically for PPI in their reviews.

Acknowledgements: RA, GW, ST, SD, A-MB and SP’s salaries are partly supported by The Evidence Synthesis Working Group (ESWG) of the National Institute for Health Research School for Primary Care Research (NIHR SPCR) [Project Number 390]. JH-H and BG are patient contributors to ESWG.

Disclaimer: The views expressed in this commentary represent the views of the authors and not necessarily those of the host institutions, the NHS, the NIHR, or the Department of Health.

Notes

[1] INVOLVE. Public involvement in systematic reviews: Supplement to the briefing notes for researchers. 2012. NHS National Institute for Health Research. Available: http://www.invo.org.uk/wp-content/uploads/2012/10/INVOLVEPublicInvolvementSystematicReviews2012.pdf

[2] Price A, Schroter S, Snow R, et al. Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study. BMJ Open. 2018;8:e020452. Available from: doi: 10.1136/bmjopen-2017-020452.

[3] Locock, Louise, Boylan, Anne-Marie, Snow, Rosamund, Staniszewska, Sophie. 2017. The power of symbolic capital in patient and public involvement in health research. Health Expectations. 2017;20 (5): pp. 836-844.

[4] Wong G, Greenhalgh T, Westhorp G, et al. Development of methodological guidance, publication standards and training materials for realist and meta-narrative reviews: the RAMESES (Realist And Meta-narrative Evidence Syntheses - Evolving Standards) project. Health Serv Deliv Res 2014;2:1-251.

[5] Harris J, Croot L, Thompson J, et al. How stakeholder participation can contribute to systematic reviews of complex interventions. J Epidemiol Community Health. 2016;70:207–214.

[6] Kreis J, Puhan MA, Schunemann HJ, et al. Consumer involvement in systematic reviews of comparative effectiveness research. Health Expect. 2013; 16(4): 323-337

[7] Wong G, Greenhalgh T, Westhorp G, et al. Development of methodological guidance, publication standards and training materials for realist and meta-narrative reviews: the RAMESES (Realist And Meta-narrative Evidence Syntheses - Evolving Standards) project. Health Serv Deliv Res 2014;2:1-251.